A New Normal

Our new normal, what is that?  We have been trying to figure this out for 2 weeks now, but either way, here is what a day in the life of the Bell’s looks like.

The morning begins around 7am, if not earlier with the girls.  They are early risers and they definitely don’t get that from me.  Ezekiel gets done with dialysis somewhere between 7 and 8 am. David and I are now outnumbered and have to have a strategy to make this work -We have to divide and conquer! Typically David takes the girls down stairs and they begin breakfast. I disconnect Zeke form his machine and get him ready for the day, shower and then we head down stairs. If everything went well for David, the girls will be finishing breakfast and Ezekiel’s morning feeding will have been warmed and stocked with his 8am medications. Of course that is not how it always goes.

Getting Ezekiel ready in the morning is not a quick task… After I disconnect his catheter from the PD machine I have to:

1. Take temperature and weight. We have to get a consistent weight every morning because it’s hard for dialysis kids to gain weight since the dialysis takes away a lot of protein. He currently weighs a 8 pounds!  Grow boy grow!
2. Change his diapers and the dressing to his catheter. Yes, he wears 2 diapers - a regular newborn size diaper on his bottom, and a size 3 diaper that wraps around his belly and catches urine from his ureterostomy. Hopefully I’ll find some time soon to modify my cloth diapers to work, so we won’t spend all our money on diapers.  Also we change the dressing where the catheter enters his abdomen. This requires me to wear a mask and keep it clean as much as possible.              
3. Record and chart the numbers from the machine for the doctor to see each month. Our machine has a memory card that keeps track but they want us to keep a paper record of them too.  The numbers show us how much fluid was pulled off, basically how much urine was made.  
4. Clean up and set up the PD machine. Nothing is reused, all bags and tubes get thrown out and replaced. To set up the machine we need the 2 bags of solution; a package of tubes, called a cassette; and a drainage bag. Connecting the bags requires me to sanitize again and make sure the vents and doors are closed. 

When connecting and disconnecting Ezekiel from his PD catheter, we have strict procedure to make sure there is no chance for any bacteria to get into the opening and cause Peritonitis - which is a serious infection that can cause damage to the peritoneum and cause dialysis to not work as well. So we have to close and lock the bedroom door, cover all the vents, wear a mask, wash hands with specific antibacterial soap (for 1 minute), and sanitize, sanitize, sanitize!

Our bedtime routine starts around 7. Divide and conquer, that’s how we handle bedtime. We try and have the girls brush their, teeth and put pajamas on while we set up the dialysis machine. Ezekiel has to be connected to his machine for 12 hours so we try to connect him at 7pm. For the most part, the girls do great when we have to lock the doors, but there have been times when they both have been crying at our bedroom door to let them in. In time they will understand. Hopefully if both of us are home one takes the girls and the other takes Zeke.  It will be interesting when I go back to work, since I will be working night shift again.  I have no doubt David can do it and do it with out me!

Feeding and medication

Monthly shipment
of PD supplies

Ezekiel gets 2 ounce bottles every three hours during the day and then a continuous feeding throughout the night - on a pump. Recently he has been a very hungry boy so we got the ok from the Dialysis Dietitian and Nephrologist to start increasing and giving him 4 more ounces during the day.  So now we give him more at each bottle feeding plus we added a 5th bottle at 8pm which is helping him fall asleep better. We tried in the hospital to give him bottles all throughout the night as well, but he was not gaining weight and using up to much energy.  We are so very proud of our little man though, he has taken all his bottles since we’ve been home!  In the hospital he was only taking about 75% of his bottles and the rest was given through his G-tube. Hopefully someday we will be able to just give him bottles but I’m not going to lie, it is nice not to have to wake up to feed him every three hours :)  I would definitely do it though, anything for our sweet boy!

Also, he takes many medications in order for all his electrolytes to stay steady.  All the medications can be given with his bottle feedings except one that we have to give through his G-tube.  With so many medications, David found an app that alerts us when and which medication should be given.

So in the midst of all Ezekiel’s bottle feedings, we have Addilyn who always wants to do some type of craft and be at my side constantly and Eleanor who is a 2 year old -a typical 2 year old, who can be as sweet as can be one moment and crying the next.  And to top it off David, on the fly, thought it would be an awesome idea to start potty training her (without talking to me about it first).  I thought we should at least wait until we get into a better routine with having 3 kids, but o well, our life is crazy and I wouldn’t have it any other way.  I hate to admit but the potty training is working, he just didn’t put a diaper on her one morning and told her she’s wearing panties.  I was not thrilled with the idea, more work for me and more laundry.  But she is doing great, much better than I anticipated.  We are 6 days into it and she even woke up dry last night!  So proud of her!

And the craziness doesn't stop... I forgot to mention we also have 2 dogs.  A 7 year old, named Tucker, who is the best dog ever!  Seriously, he’s the best dog!  And then there is Rizzi, a 8 month old puppy who has so much energy she doesn't know what to do with it.  We got her in a weak moment, not going to lie, but she is such a sweet girl and our girls absolutely love her!  We contemplated on giving her away several times…. at one point, David even told the girls that Rizzi has to find a new home… That ended with tears streaming down Addilyn's face.

All in all, we are adjusting to a new life and new rhythm. It is very hard at times but the reward is worth it! I am finding time to spend with the girls one-on-one and I love being a family of five. Our family is complete!

Going Home!

We were finally given a date for our little man to come home - Friday, March 3rd!!! When we told the girls they jumped up and down and screamed. As the days got closer, our girls would ask about him daily. Every night when we put Addilyn to bed and when she wakes us up in the morning she would ask “Is Ezekiel coming home after my nap time?” Our girls were so ready to have him home and are just so full of love. One time after dinner, David asked Addilyn if she is excited to have Ezekiel come home and her reply melted our hearts. She said, “yes! And then you and mommy won’t be sad anymore?”.

Mixing Formula Training

Infant CPR Class

The last week in the hospital was filled with training and preparing for taking a dialysis patient home. We had three sessions of training on the peritoneal dialysis machine; teaching on mixing the breastmilk formula and how to give medications… Plus, David (and the rest of my family) even took an Infant CPR class. 

As the week went on... it was getting more real, Ezekiel was going to finally come home!!!  In the midst of our excitement, the anxiety swooped in… we have to get the house ready for him and we haven’t even started!!! We have to set up his crib in our room, we have to clean the carpets, we have to have a place for his machine and all the supplies, and so much more... So we got to work and spend the day cleaning. We vacuumed, cleaned the carpets and dusted everything. Addilyn and Eleanor even helped us wipe down our walls and windows. It felt so good to clean, especially for our little guy. 

Friday finally came; it seemed like it would never come. This was day 31 in the NICU for Ezekiel. Driving to the hospital everyday was exhausting; leaving the girls everyday caused minor separation anxiety and just the everyday stress from the whirlwind of life was wearing on all of us. But the day finally came and I believe Addilyn captures our excitement when she jumped up and down on the morning of, saying, “Baby Ezekiel is coming home!!!”

I will never forget March 3, 2017 -it was the day we could stop driving back and forth to the hospital, it was the day we could stop crying ourselves to sleep at night, it was the day we got to finally be a family of five and our son, Ezekiel Joseph Bell, got to come home!

Of course, when we arrived to the hospital we had a minor bump in the road with dealing with insurance, but everything else went as planned. Many of my nurse friends stopped in to say goodbye to us (even though we all know they were just there to snuggle Ezekiel one last time 😉 ). 

I can not express how thankful we are to all his nurses, APNs and Doctors who took care of Ezekiel. There are not words to describe how much they all mean to us, or enough cookies in the world to thank you all.  I hope no one reading this has to know how extremely difficult it is to have to leave your child at the hospital and go home.  But being a part of the NICU family made it easier and gave me some peace, knowing my friends were there taking excellent care of him, snuggling him, and singing to him when I couldn’t. Thank you NICU Nurses, you do amazing work!!!

Being a NICU nurse myself, it was extremely hard to be in the opposite shoes. What is most difficult is that I know way to much of what could possibly happen in all situations, especially with 2 major surgeries in his first 5 days of life, dialysis and looking into the future with a kidney transplant.  

Emotionally I was a wreck inside from day one of finding out (at 20 weeks pregnant) we were going to loose. However, there was hope at 24 weeks... Hope we clung to the entire pregnancy and still cling to today. I could not have gotten through this without all of his nurses, my friends, my family, my husband,  and especially God. I know God has a plan for our little boy and we are watching it unfold now.  God has already humbled both David and I by realizing we can’t do this on our own. Watching people clean, cook, and care for our girls for us during this last month was very hard.  You can ask anyone, I’m not one to seek out help, I like to be the one helping.  But we are so grateful for all the love and support everyone has shown us and continues to show us everyday.  Thank you all for your prayers and please keep them coming!  

We ask for continued prayers on the following 
     1. That dialysis would continue to go well,
     2. Steady weight gain,
     3. We can adjust to the new rhythm